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SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda BurkeLatest Reply |
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SolirisCurrently an aHUS patient using or considering treatment with Soliris? Please add your voice to this Forum!Several members of this website… Started by Linda Burke |
282 |
May 18 Reply by Svetlana Finley |
Check upsHow frequently should I be seeing my hematologist/oncologist? Should I be having blood tests done regularly? I don't have a doctor/specia… Started by Lannette Yorgason |
1 |
May 5 Reply by Svetlana Finley |
UK aHUS PatientsAt such a crucial time in the UK with regards to getting funding for eculizumab it is important for patients and their families to do as mu… Started by Lisa Barker |
39 |
Apr 7 Reply by Lisa Barker |
Split liver in ahus kidHello members . Now I have created the ahus assosiation in Spain . By the moment only know 7 people and there is 253 ahus cases in Spain .… Started by maria vicenta carratala rios |
10 |
Mar 22 Reply by Len Woodward |
Post Soliris and/or Post Transplant by the numbersI know most of our "numbers" are posted in various Forums, primarily under "Soliris", so one of our goals will be centralizing the number… Started by Bill Biermann |
11 |
Mar 5 Reply by Cheryl Biermann |
About the splitI have informed about this case Here in Spain but the decisión in His parents was done ! I not agree because I do not have información ab… Started by maria vicenta carratala rios |
1 |
Feb 27 Reply by Cheryl Biermann |
Is there such a thing as "Atypical HUS Free" or "Remission periods"Hello All, The Foundation and the Scientific community are currently wrestling with the following topic: DOES ATYPICAL HUS GO INTO REMI… Started by Bill Biermann |
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Feb 16 Reply by debbie thelwell |
Seminar at House of Parliament Jan 17thHi i was wondering if anyone who was attending this had received their invite yet? Started by Lisa Barker |
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Jan 20 Reply by Cheryl Biermann |
Taking the dread out of the hospital visitsHi, After speaking with one of our parents, I thought, well this would make a great forum for new parents! Who else has suggestions in m… Started by Cheryl Biermann |
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Jan 18 Reply by debbie thelwell |
Soliris side effectsHappy New Year everyone! I have a question about soliris...I'm wondering if anyone has seen a significant change in hair loss. My sister st… Started by Jessica Rios |
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Jan 5 Reply by Cheryl Biermann |
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.
Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.
NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.
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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

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